Since Gage’s transplant we’ve been in hyper-parent mode (I know you wouldn’t know that by the med mix up) to do everything just right in relation to his well-being. I think (beside the Prograf debacle) we’ve been doing okay.

Poor Quinn’s been ignored a bit on the medical front. She had her annual testing in December for ultrasound, echo, and labs and apparently a repeated lab at her normal interval of 3 months somewhere around the month of February or early March.

I have no memory of it having ever occurred.

Julian states that Grandma took her for labs and Grandma agrees. And I know somewhere in my office of now 15" high medical paperwork sits lab results from that visit. Maybe.

It’s interesting being pre and post transplant with the kids. Before transplant I don’t quite remember what I was expecting but now that I’m here I can say there is definitely a shift to a higher level of anxiety. We knew kidney failure. We could do that with some certainty of what the outcome would be. Failing kidneys = Dialysis.

While we have to believe that all will go well with Gage’s new found 100% kidney function for a long time we still worry. And we still worry for Quinn and her struggles; educationally, developmentally, and kidney function (or lack thereof) and inevitable kidney transplant. I can’t imagine my feelings around worry where the kids are concerned being any different than they are today.

The meds are a constant reminder of what is in the present for Gage and what is in the future for Quinn. Odds are that transplants will go well for both Gage and Quinn. But I do often wonder if we are using up our good kidney karma on Gage and if Quinn will suffer because of it. At some point, will our odds run out? (I mean besides the odds of having your only two children born with a rare recessive disease and vision disorder.)

PKD has shaped our lives as parents, individuals and as a family. We live in a constant state of low-grade worry. Is there any relief from the worry as parents? Not really. Every single day we wonder what the future holds for us as a family because of the affects of PKD. We realize everyone’s futures are uncertain, but it’s different for us because we are reminded constantly there is a reason for the uncertainty. Their very lives are fragile.

All the more reason to enjoy each day with them.